Support Groups, Pt. 2: Questions to Ask

The last blog explained why support groups are a necessary part of a healthy care partner experience. But what do you look for in a good support group? Jim and I both know from personal experience that although a support group can be a highlight in a care partner’s life, it can also be a true bore, or even worse, a depressing event. What makes the difference? Well, a lot depends on its physical attributes, guidelines, structure and facilitator. To start, ask yourself:

Do I want a local face-to-face group or virtual online group? Each has their unique values and many care partners recommend that if possible you use both. A local group gets you out of the house and meeting other, like-minded people who over time may become friends. However, not all communities have local LBD oriented groups. Also, these groups usually only meet once or twice a month. You can find many LBD-oriented groups online and they are all ongoing. You can go to one any time of the day or night every day. Another advantage of virtual groups is that you can probably find a discussion about almost any subject at any given time just by doing a search.

When you find a local caregiver support group, ask questions like these:

Is this a general or a LBD-specific group? It is usually best to choose a LBD-oriented group.  Members in a general caregiver support group may not be able to relate with dementia-related issues. Those in a general dementia group or an Alzheimer's group may not be able to relate with the LBD specific symptoms such as movement issues and hallucinations. Members in a PD group may, but they may be resistant to dealing with dementia issues. However, if that isn't available, choose the best fit possible and supplement it with online LBD-specific groups.

Am I eligible to attend the group? Some groups are open to any interested person and some limit their members to only certain groups such as spouses, adult children, teens. Open and closed groups each have their value. You get a broader view of the issues in the open group and usually, more attention to those issues specific to your own in the closed groups.

Where does the group meet? Many meet in care centers, but some meet in private homes, senior centers or hospitals. Some groups meet in restaurants. If that is the case, ask where the meeting area is. We've attended such groups where the meeting area was right in the middle of the main room, which lend itself to talking about confidential issues. Others where it was in a separate room or area where members felt comfortable to talk.

When does the group meet? For a care partner who is also working, an evening group is usually better but for a full time care partner, an afternoon group is. By evening, few care partners want to leave the comforts of home!

How large is the group? From six to ten people is ideal. Any smaller, there is likely to be a good cross-section of issues and suggestions. A larger group decreases the feeling of intimacy that is needed for a successful group. Besides, not all members may be able to share.

How long does the group last? An hour and a half is ideal. Any longer without a break and people tend to lose focus. A larger group may go for a couple of hours without a problem.

Are the start and ending times are clearly stated--and kept? Care partners usually have limited time that they can be away from home and will feel anxious if kept longer than the expected time.

Do you have day care available for my loved one? Some groups, especially those that meet in a care center, offer free daycare during a support group. These will allow you to bring your loved one along and they can get a taste of what being in a care facility is like. They usually provide entertainment, music, singing, story telling, etc. during this time to keep it interesting.

What is the cost for the meeting? If there is a fee, be wary! There may be a small charge for daycare, or if an association is holding the meeting, they want you to join. But the meeting itself should be free.

Next week, more about support groups.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Support Groups, Pt. 1: Why You Need One

Individual care partners coming together to share, learn and encourage.

Past blogs have mentioned how important we feel it is to be a part of a caregiver support group. In our latest book, Responsive Dementia Care, we wrote:
There are many excuses for not attending a support group:

• I don't have time, or the energy.
• I don't want to listen to other people whine.
• I don't want to talk about my loved one--it sounds disrespectful.
• I'm awfully private, I'd never be able to talk to strangers.
• And so on.

But group members tell a different story:

• I don't know what I'd have done without my group!
• My support group gives me strength to keep on.
• I can talk about my loved one here and the group members understand; they've been there. They know my loved one's behavior is dementia-caused, not personal.
• I learn new ideas, new ways to do things, new resources."
• I come away from the group feeling stronger. How do caregivers survive without a support group?

Support groups do all of that and more. They relieve loneliness from the isolation that is endemic with dementia care partners. The feeling that you aren't alone on this journey can be a great stress reducer and depression chaser.

Our book, A Caregiver's Guide to Lewy Body Dementia, talked about the value of being able to vent and share experiences in support groups:
"Thank goodness I have my support group. When my health aide insisted that I try going, I wasn’t sure I should leave Emma that long. But I come back feeling so much better and more able to cope. You can relate. I hate to bore my friends with my ups and downs and besides, they don’t really understand. My family supports me but they don’t understand either. You can’t if you haven’t lived it. -- Howard
Howard’s group relates. He can vent and his group knows he is simply frustrated, he doesn’t want out. He can ask, “How do you handle this?” and get answers from others who have had the same problem. He can make jokes about his situation and his group members aren’t shocked; they laugh with him. He goes home feeling better about himself and his situation.

In a well-run group, venting isn't the whining mentioned earlier as an excuse not to attend. It is instead, a needed release of frustration, usually followed by some supportive a few "I've been there too" comments from other group members, followed in turn by some constructive suggestions about what worked and didn't work for them in that situation.

Next week: What to look for in a good support group.

Living Life

For us, summer is the time when we are refugees from our Arizona home, driven away by hotter temperatures than we want to endure. We live 24/7 in our RV, finding space to do most of the things we do at home, but not nearly as comfortably. All of our books have been written at least partially, while we lived in our RV. However, we don’t spend much of our time or efforts thinking about what we don’t have, for summer is also full of treats for us and those are what we try to focus on.

Summer is when we see more of our kids, grandkids and great-grandkids. What with a reunion and smaller family get-togethers, meeting up with old friends, spending time on the family farm and getting to meet my newest great grand baby, 3 month old Shilo (a real beauty already!) we've been more focused on family and friends this summer.

We took a weekend to visit my brother's family...and to drop in on my nephew Tom's dementia support group. His wife has LBD, and they've been dealing with it for several years. He's a very quiet man, but he's learned to use his group. He shared his experiences and ideas and nodded in camaraderie with others as they shared theirs. "This group has been such a great help to me," he told us, and the group. "It keeps me from feeling so alone." We hear that a lot, but it was especially wonderful hearing it from family, and from this usually so reticent man. One of the topics under discussion was respite time. We were impressed at how they all seemed to understand how important that is and how each of them had developed ways to have some.

Visiting support groups is usually a very important part of our lives...for a different reason than Tom's. We are not living with LBD; but we are listeners. It is true that we always try to share information when we visit a group, but we also listen. We listen, and hear about issues and joys, concerns and successes, questions and answers about what has worked and what hasn't. It is where we get most of our ideas and information for our blogs and books, and to pass on to other groups. But we are really in vacation mode this year and Tom's is the only group we've visited.

Summer is mostly camping time for us. It’s when we live in RV parks and visit with other campers. Most of them have connections with people with PD or dementia, but we don’t talk about it a lot. After all, for most of these people, this is also vacation time. Unlike us, they aren’t living in their RV 24/7. They are more into having fun than into learning about illness. And so it becomes vacation time for us too. We visit, play cards and pick blackberries. I made blackberry jam, blackberry shortcake, blackberries and cereal, blackberries and… Ugh, I’m sick of blackberries.

Anyone who's read our On the Road with the Whitworths book knows how frugal we both are. The local casino's Senior Monday Buffet ($3.95 each!) is just up our alley. Then we get to play the slots with the $10 they give us, hoping that we’ll get hooked and play a lot more. Last time, I came home with $23. Jim left his 3 cents on the machine. In the same frugal spirit, we toured a park-wide garage sale and came home with a couple of finds. There were other things I liked but living in an RV makes us pretty choosy…no room for things we can’t use right now. And we did some sightseeing although we’ve already toured this area and so it was more something to do than exploration. Again, living in a small space makes getting out (even in the smaller space of the car!) pretty attractive.

 And so this blog is not really about LBD. But it is about living life and making the most of it. You have to do that no matter what else is going on. Like Tom's group members,find some time to live your own life and find the positives even with LBD causing its usual havoc.

For a fun read about the first year we RVed and taught about LBD,:
On the Road with the Whitworths.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.

Two of a Caregiver's Best Friends: A Journal and a Support Group

“Now I’m supposed to keep a journal?” Claire, a fiftyish woman with a harried look asks incredulously. “As if I have time for that when I’m doing all these other things I have to do. I don’t understand why Leon can be so like a two year old, getting into everything and so dependent I can’t even go to the bathroom alone and then when we go to the doctor, he’s just fine. No wonder the doctor doesn’t do much. Why does Leon do this? I get so mad at him. Why can’t he be that sharp with me? Is the doctor more important to him than I am?”

“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”

Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:

• She takes Leon’s fluctuating cognition personally. This is a hallmark symptom of LBD. A person can carry on an intelligent conversation one moment and be utterly confused the next. (See the x blog for more about this symptom)
• She doesn't understand the special “Showtime” aspect of fluctuating cognition where a PwLBD will act with clarity with someone other than the caregiver then revert back to his normal confused state when that person is gone.
• She still believes she should be able to reason with Leon.
• She doesn't understand that Leon will remember the things in his reality, especially the negatives like her “infidelity”, easier than he can those in her reality—the nice things she does for him.
• She doesn't understand that her agitation just makes things worse because he will mirror the intensity of her response.

Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.

Their suggestion that she keep a journal is right on. She can use it:

• As an on-the-spot record of Leon’s fluctuating behavior that she can show to the doctor or family members to support her own words. Videos and audio recording work well for this too.
• to keep track of those behaviors like Leon’s delusions of infidelity so that she can discuss them at her support group. That way she can learn better ways of dealing with these than becoming hurt angry angry.
•  to track Leon’s medications and their results. Because LBD is a progressive disorder, a person’s reactions to drugs will not necessarily continue to be the same. What once worked may now make symptoms worse, or may stop working at all or…
• to vent in a safe way—and perhaps be able to keep her cool with Leon, thus lowering his stress level.
• Can you think of other reasons for keeping a journal? I’m sure there are many!

Read more about the benefit of support groups in the 10/1/11 and more about fluctuating cognition in the 10/26/12 and 5/12/12 blogs. You can also read about LBD in general in A Caregiver's Guide to Lewy Body Dementia by Helen and James Whitworth. You can buy this book and many other LBD related books from our online store at LBDtools.com.